Great Grandpa with UC

This is Bob, 60 years old from Baraboo, Wisconsin, I was first aware of my Ulcerated Colitis in 1995 for years I was treated with 500mg sulfasalazine. Flare ups have happened every two or three years. I now have a flare up for the last two years that won’t quit.

Some more about Bob:

I am a Great Grandfather of three boys with another on the way. A Grand father of two girls and one boy and a father of one Daughter.My kids all depend on me one day or another. I need to stay healthy enough to help all of them. I was born in Milwaukee Wisconsin but have lived in Surrey, England, y, Geneva Switzerland and Denver Colorado. Now I have returned to Baraboo, Wisconsin to be here for them.

Symptoms:

My symptoms today are as follows I wake up at night to relieve my bowels three times early morning usually two to three more times. I am able to function all day long without any runs to the bathroom. I have no blood in my stool. I have been going to infusion center for remicade. My last infusion caused a severe reaction I vomited and froze up. I doubt I will be going back for any more infusions.

Great Grandpa with UC

My question to other Uc’ers. After remicade where do I go from here? Nothing my Doctor does seems to help me anymore?. I thought I would reach out over the Internet for ideas I really have not tried hard on my diet and feel ready now. My UC has no bloody stools I have very little pain, my day is usually ok. The issues I have is waking up at night to release the pressure in my bowels usually its very short and muddy. First thing in the morning I have to empty out two or three more times than my day goes pretty well. I really don’t want to make the ultimate final surgical move that’s not reversible because I just don’t think my life is that bad and I can deal with it. Speaking of flare ups after discovering I had UC in 1995 it eventually went away while taking Sulfasalazine two tablets twice a day Five years I had no problems then in the year 2000 another flare up that once again went away with the same medications 2005 once again another flare up with lots of blood in my stool, same treatment Sulfasalazine twice in morning and twice in evening eventually went away. Once again I had no flare ups for about five years than in 2010 back to massive inflammation and bloody stools. This time I was treated with steroids and Sulfasalzine. Two years later with another flare up I was given Remicade infusions which worked the first time and my stools went back to normal for about a year so I stopped the infusions and the flare up came back around 2013 and after restarting with Remicade nothing seems to be improving this time and I am getting a serious reaction so now I am done with remicade so now I am looking for non surgical answers.

Medications:

Past treatments 500mg Sulfasalazine three in morning two at lunch and three in the evening. Remicade infusions about ten of them but due to a recent reaction they will be stopped.

written by Bob S

submitted in the colitis venting area

About Bob S

from Baraboo, Wisconsin, I was first aware of my Ulcerated Colitis in 1995 for years I was treated with 500mg sulfasalazine. Flare ups have happened every two or three years. I now have a flare up for the last two years that won't quit.

7 Responses to Great Grandpa with UC

Remicade worked pretty well or me, but not as good as cigarettes! When I got off the remicade due to not having insurance anymore, I was in a lot of pain in my joints– incredible pain for about a month. I asked a nurse why that was and she said it was because the Remicade had built up in my liver and was breaking down. I do not know if I will ever go on Remicade again– the health risks seem high. Cigarettes seem less risky although I’m sure they would argue with me. Now, if I could only cut my smoking down to 5 a day, I’d be great!

Hi Bob, I wouldn’t be considering a surgery option either if you can function well throughout the day and especially since you’re not bleeding. I would definitely look into diet to get those middle of the night wake ups under control. Do you have trigger foods? Early on, I found my trigger foods to be popcorn, corn, nuts and seeds and I have expanded that more recently so that I am also excluding hard to digests like broccoli, asparagus, brussels sprouts.

Julie I was offered an option last week to try Humira my Insurance wanted me to pay a1000 dollar co-pay I said this was not going to happen. When I called Humira I was referred to specialty pharmacy and told my humira would be completely free no charge, no co-pay in fact my Insurance was not even going to be used. So I would not give up and just smoke cigarettes there is help and guidance out there for you. I quit smoking about ten years ago cold turkey I smoked two to three packs a day.

Nicole I am new to the UC diet and believe it makes a difference. I really feel better eating baked chicken and pan buttered veggies. I am in the early phase of discovery. As mentioned above, I am going to try Humira next starting soon in September no surgery planned right now, thank you for your support.

Hi Bob,
I am new to this website, but 3 years into UC. My diagnosis went from moderate to severe rather quickly. I have not had any remission without prednisone.
I did not know anything about the SCD until I found this website, so I have launched myself into it a week ago . I hope it helps.
I too had the Humira cost shock, but I am also using their specailty pharmacy. My co-pay is $10 at CVS pharmacy. I have the meds delivered there because it is refrigerated and I am concerned that it may get delivered to my rural home when I am not there and not stay cold. I found the “pens” somewhat painful durng and shortly after injection, but I was given advice at the pharmacy to let it sit out of the fridge for 10 to 15 minutes so it isn’t so cold when I use it. I found that to have reduced the pain a bit. The shots are every other week – so a bit of pain that infrequently is ok. I have just started on this med, so I do not know if it will work for me.
I wish you well and hope that the medication and diet work for you.

I have had a bit of confusion on the site…. would like to read more about other UC’ers ( it gives me hope and a smile). I cannot figure out how to quickly find the posts both old and new. Can someone guide me?

Thanks for the tip, I plan to start next week my nurse is going to help me out with the first injection, I will ask her to leave it out for ten or fifteen minutes. Thank-you for the advice and I hope Humira works well for you too.

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